Interview with Cancer Previvor – Michelle Dick

Interview with Cancer Previvor – Michelle Dick


[inaudible] Hello and welcome. I’m Gregory Thelian and today I’m joined
with Michelle Dick and we just finished doing a little shoot and I really wanted
to create something meaningful with this session and I was really happy
when you reached out to me and told them your story. Michelle is a previvor of cancer and
I would just love it if you could just share with everybody exactly what that
is. Sure. And what you’ve been through. So a previvor is
different than a survivor. A previvor is someone who decides to have
surgery before they get cancer because they’re at a higher risk for
cancer. And most of them are women, and they choose to have their breasts
removed with a double mastectomy, and they, do other female
reproductive surgeries. My breast journey started,
shortly after I had my daughter. 17 years ago I found a lump. I went to the doctor and I had a
lumpectomy and it was non-cancerous. All was good and everything was fine. But then I would notice I had more and
more lumps in both breasts. So back, I would go to the oncologist and
they were cystic, no worries. You have needle aspirations
where they take a needle, they basically take all the
fluid out and you’re good to go. But then more would come and more
would come and more would come. So over a span of like 10 years, I would just keep going back and
forth to the doctor and having needle aspirations and biopsies and MRIs and
a whole bunch of procedures done on my breasts. Finally, one day
my surgeon said, you know, it’s time I want to, if you think about
a cyst, it’s like a water balloon. So you remove the water but you still
have the balloon part. And she said, I need to test the balloon part.
So I said, sure, let’s go for it. How do you do that? She’s like, well,
I’m going to remove your nipples. Waa wait what you’re going to do what?
I’m going to remove both nipples. I’m going to remove, the water balloons
if you will, from both breasts. Test them, but don’t worry, I’ll put your
nipples back on. Okay, great. Thanks. And, we’ll see what comes of it. So she removed four things from each
breast and each one had pre-cancer. So my option was to possibly
go for a double mastectomy, but insurance denied it because no
one in my family had breast cancer. They wouldn’t even let me do the BRCA
testing to see if I was a higher risk because insurance said, um, no
one has cancer in your family, so you don’t need it. Now it’s,
you know, it’s a ton of money. So instead of just doing a simple
test, they put me on a chemo pill, um, for eight months.
And during that time, um, although it said not to have
many side effects, I did, um, my hair began to fall out, mood swings,
irritability, cranky, which, you know, sometimes I am to begin
with, but this was worse. So it’s har to tell if that was a symptom.
Exactly. Um, but in all seriousness, I just felt really awful on it. And one day I was at the computer and
always feeling for a new lumps and there was a new one. Now the pill was supposed to slow
them down and possibly stop them. And I was like, Oh, that’s not good. And then I felt my other breast and I
just was consumed with these lumps and I finally made a decision that,
you know what? I don’t care if insurance is going to cover it or not. I’m going to elect to
have a double mastectomy. I went back to my surgeon who thank God, listens to me and listens to my
body and said, okay, slow down. Let me do some testing.
Let me see what’s going on. I’m sure it’s not as bad as you
think, but we’ll make a decision then. And she did another sonogram
and really was blown away. Both of my breasts were
just filled with cysts. They were so swollen and overwhelmed with
these cysts that were supposed to stop with the chemo pill. So immediately I
stopped the chemo pill and she said, look, I’m going to put in for a double
mastectomy. And if they don’t approve it, you know, we’ll cross that bridge. Well,
within 12 hours insurance approved it. And that’s how I knew. Okay.
So it’s, it’s serious now. Um, and this was without a BRCA test? Oh
no BRCA test whatsoever. I had, um, a breast MRI, um, sonogram, an ultrasound and of
course mammograms. Um, but cysts don’t show up on mammograms.
So, and like I said, the casings, if there are issues in it,
don’t show up on mammogram. So the best thing is a breast MRI, which insurance companies also don’t like
to pay for because the costs a lot of money. They don’t want
to pay for anything. No. So now the decision is do
you prophylactically cut
off your breasts or do you not? And for me there was
no doubt whatsoever it was, let’s cut them off before
the cysts grew back, I was about a 50% chance to get
breast cancer in the next five years. And then when they, when it grew back,
they said I was between an 85 and a 90, 90% chance that I was going
to get breast cancer. Um, so like my question to you is
if someone said to you, okay, if you cut off X body part, you
will not get breast cancer. I mean, you are not getting cancer in
that body part, but if you don’t, we’re going to sit and we’re going
to wait. We’re going to watch you, but you’re probably going to
get it. What would you do? I would probably just chop it
off. And that’s what I did. Because it, when you
have that much of a risk, when you’re at like 95%, this
is going to become cancerous. You want to stop that before
it even became [inaudible]
because once it becomes, then it could spread and then you
can only chop off so many body parts. Exactly. So I made the decision to
do a prophylactic double mastectomy. Um, I had it done February,
um, five years ago, and the response was not what
I thought it would be from, some friends and, um, other people in my life that
were, well, why would you do that? Just what’s the point of that? You know, that you’re putting yourself
and you’re doing this big, big surgery and you know, you know, it’s stop with the attention and stop
trying to do this. You don’t have cancer, so don’t worry. And they’re
right. I didn’t have cancer. I had pre cancer that grew back. And
when your doctor tells you, you know, there’s a really good chance
you’re going to have cancer. Um, I chose not to wait. I want it to be here at the time to be
a healthy mom for my daughter who’s now 17, but she was 12 and I wanted to see her
graduate high school and I wanted to see her, you know, get married and all those life events
that I was very afraid cancer would take away from me. Yeah. So I
had the double mastectomy. And during the surgery
they put in expanders, which are these hard pieces of plastic
that they fill with a little bit of fluid. And then every two weeks
after your double mastectomy, they fill them with fluid and they fill
them until the desired size that you want. Then you get to have another surgery
where they take the expanders out, they put the implants in and you
should be pretty good to go. Yeah. Unfortunately, that
didn’t work for me. Um, during my, um, time I had the
expanders. I did too much. You really supposed to be very careful. You’re not supposed to be using your
arms, lifting, laundry, cleaning, all that good stuff and I
remember you were telling me that, and you didn’t have the
support that you needed. And I did way too much and my expander
slipped into towards my armpit. So I had to have my reconstruction
a little bit earlier and um, woke up from the reconstruction
feeling much better and much less pain, but still there was something
wrong with that side. And for a year the doctor
would listen to me and, and they were fantastic and it was, you
know, let it heal, massage it, do this, do that. I tried everything.
And after three years, I couldn’t use my right side. I
couldn’t open doors with my arm. I couldn’t hold my pocketbook. I
couldn’t lift things with this side. And it got to the point that
back to the surgeon, um, the plastic surgeon, I
would go and she said, so I think that you need to have your
implants taken out and different ones put it in. So I had smooth, round
implants, but. Was that silicone? They’re both silicone. They were
silicone and they would slip. They just, there was nothing to
attach it to. So I had, smaller textured, they’re called gummies and
they kind of stick to you. And after that for three weeks, that was last July for three weeks, I could do nothing like pretty much my
arms had to stay like this, showering, eating, there was no driving anything. Um, thank God I had the support of my
husband and my daughter who just did everything for me and I
was able to actually heal, where I didn’t heal the first time. And for the first time ever I can
use my arms and I could, you know, 98% pain free and it’s fantastic. You know, it’s, you’ve been
through so much with all of this. It’s like, I don’t even know how, like I like I couldn’t go through
something… But you could. You say you can’t, but
you, you have children, so what’s your choice?
Exactly. What do you do? Do you just stay in bed and complain and
whine about the pain or do you continue being a father for your girls
and a husband to your, your wife? And it’s funny because you know some
people do know that I just went through recent eye surgery and for like the first
two weeks I had to keep my head down between my legs for 50 minutes every hour. So I could only raise my head up
for like 10 minutes out of the time. But even while I was doing that, like I would have my arms out and
I would play games with my kids. Because you figure it out. Yeah. I was
like, put something in daddy’s hand. I’ll guess what it is. And it’s
like I entertained them like that. And you’re right. You know, you just push through it and
you do what you have to do. When I had the double mastectomy, it was a time that my daughter and
I bonded even more of, all right, so it’s time you learn how to cook. So
she made chicken cutlets. She made soup, she made sauce, she made everything. I couldn’t for almost two
years, I could cut a carrot. If you think about the, the um,
pectoral muscle, you need to cut things. I couldn’t do it. So she did,
she did everything even um, during the healing process of eating
dinner and cutting your basic food, you know, I couldn’t do, um, and during
that whole three years it was, you know, I’d sit there and you look at the food
and you decide what you’re going to eat based upon what you can cut because I
didn’t want to go out to dinner with you, let’s say, and be like,
could you do me a favor? Could you please cut my chicken? It was
embarrassing. It was, it was degrading. I felt so awful that I “chose” to do this
surgery that ended up causing me more difficulties. But I’m alive and here. You are, and the main
thing that like, you know, I was drawn about with your story is just
how happy you are now and like how you overcame all of this. I am now. It took a long time, um, to feel beautiful and
sexual and desirable when, when they cut off your breasts,
which are a, an intimate, sexual part of a woman’s body. And I did what’s called the nipple
sparing mastectomy. So I kept my nipples. Um, you, you wake up from your surgery and all
I had were these little expanders. There are no breasts there and
you’re like, Oh Hmm. Oh, Oh, okay. And then the fills make them a little
bigger, a little bigger, a little bigger. And then even when you first get
your implants, it’s, you know, they’re like up here and they’re
big and you’re swollen and, and they feel different and you know, to, to try to feel beautiful
again. And, and when I was, um, looking at your work and, and
realizing like, you know what, like it’s time that I, I keep
looking at my, my inner beauty, my, my current husband, he, he allows me to realize that
my beauty is from within, it’s not a body part. He believes that my scars are badges of
honor and that I’m a warrior and it’s taken me to have him, and my daughter realize
that, you know what, I’m beautiful whether I have fake
breasts, real breasts, whatever. I mean they’re real because they’re
a part of me and they’re who I am. But to put myself out there to do a shoot, to encourage other people that might
be in the same boat or might be BRCA positive or you know, might have such a high risk to realize
that you could be beautiful and intimate and sexual and have a picture taken
of you to show your strength. Um, there’s a whole group of women out there
that are previvers and where the people that are the, the, the quiet group because you have a
survivor that hears the words “I have cancer.” And I’ve never, and
I’ve said this for five years, I’ve never wanted to disrespect someone
who has heard the words “You have cancer.” Yeah. Because what they’re going through is
a whole nother battle in a whole nother war. And whether they only have to have a
lumpectomy or this or that or have to have radiation and chemo, that’s their
battle. And that’s, you know, there’s to deal with. What I went through was my own battle
on my own situation that although people say you chose it, did I really,
because I wasn’t waiting for cancer. Um, my husband made me
realize years ago that you kicked cancer’s ass
before it could kick yours. And I have very good friends who
are survivors and many of them said, if I had the chance, I would’ve done
this way before if I knew what you knew. So you spare yourself going through
everything when you do have cancer, you know. For, for a bunch of years. I did relay for life through
the American cancer society. I’m raising money for all
cancers, not just breast cancer. Anyone who was affected by it.
And I’m very successful at it. I’ve raised over $25,000 for the
American cancer society and something I’m really proud of. You should be.
And the last year that I did it, which was two years ago,
um, when I’m registering, I checked the box as survivor because
everyone kept saying, but you are, you have survived your own battle. And I clicked it and it was very
challenging for me because again, I don’t want to disrespect what a
cancer survivor has gone through, but I’m a cancer previvor. Um, and have survived all of that. And I got this wonderful invitation to
come to a survivor’s dinner and with no harm on the American cancer society. It
said, if you’ve ever heard the words, you’ve got cancer, you’re welcome to
attend and I’m not welcome to attend. So I contacted my person through
relay for life and I said, I might’ve been crying just a little
bit. I was really, I was devastated. It was like a kick to
the gut. And I said, so you encouraged me to click
the survivor box I did. And the verbiage you’re using excluded me. So I respectfully declined the
invite. I will not be a part of it. I will still be a part of the American
cancer society and I will still raise money, but I won’t be coming
to the dinner. And she’s
like, please, please come. And I said, I would like you to give me a contact
number of someone else I could speak to and let’s begin to do something about
it. And she gladly gave me the name. And um, it took about a year working
with the American cancer society. They have changed the verbiage
on their, um, nationwide. I lost the word nationwide
materials. Thank you. And last year was the first
ever previvor lap at a, an American cancer society relay
for life, which I spoke at. And I walked proudly and we’re going to
continue explaining what a previvor is. You know, most people you hear
survivor, you know, they’ve, they’ve survived something, but a previvor
is like, Oh, you chose to do that. So it’s not a big deal. But when
you hear the big deal that it is, it’s something that should be honored
and it should be respected the same way the survivors should be honored
and should be respected. So I begin to make change any way I
can. And this, when you said, Hey, let’s do this, shoot, let’s
explain what a previvor is. Let’s explain what you’re doing and
why you’re doing it. Um, and I said, all right, well let’s do it. And that’s why we’re here today and
that’s what we’re doing. And you know, I can’t thank you enough for, you know, first educating me about what this is
and everything you’ve been through and, you know, hopefully educating
others through this video. I just want everyone to
think for a second though. If you could beat cancer, would
you? And not everyone would, some people, it’s a huge undertaking. If I had, God forbid, like
testicular cancer, you know, would I, you know, get it removed. Would I
do that surgery? And It’s like.. You can say it testicle. It’s
okay. Yes. It’s like, yes, I would get my testicles removed if I
knew it was going to become cancerous. I don’t want to put my family
through what that would be, that process. I’d stop that.
You know? So it’s like, because they’re intimate body parts, it’s, it’s taboo, you know? And for me it’s just saying breast cancer,
like it’s okay. You can say breasts, you can say testicles, you
can do all of those things. You can say all of those things. But to sit and realize that you can
prevent cancer if you’re at risk. I’m not saying people should go
to the doctor and say, listen, I want to cut my breasts off when there’s
no reason to. I don’t wish for anyone. After you describe this to me? You know, I did some research and I know that
there are some people out there who have like a family history a little bit. So before even like getting checked
before getting like any testing, they just like, I don’t even want
to bother and get it removed. Sometimes they find out that you know,
they weren’t going to be, you know, cancerous. So it’s, it’s, it’s
definitely a tough decision to make. And it’s something that you should reach
out to others to educate yourself and to learn so you can make the best decision
that’s right for you and your family. And that’s always what I tell people. If people were going through something
similar like you, where could they go? Um, well first of all, the first
place I would go to is your doctor, which sounds silly, but you
need doctors that listen to you. And understand where you’re coming from. If you have a doctor that’s not listening
or you don’t get that good vibe, find another. Don’t worry
about upsetting them. Yeah. It’s your job to advocate
for yourself. Um, there are not a lot of places
that you can go for previvers. I have found a couple of groups on
Facebook that have been really supportive, but it’s, you think of Angelina Jolie, she’s the first one that
you heard of that tested, tested positive for the BRCA
gene and she cut her breasts off. Um, but I can’t call her up and say
like, Hey, you know, what’s going on? So ask, ask your doctors, are there other people that you
know had that have done this? Are they willing to talk?
Who can I reach out to? Um, there’s plenty of organizations that
don’t even realize they have previvers and there are people like me who will talk
to you and will share my story and I can’t tell you what’s best for
you though. That I will tell you, I can only tell you what worked for
me. And you have to make that decision. And that’s the really hard decision. But I will say if you have a family
member that decides to do a prophylactic double mastectomy, please
be supportive of them. Please help them and don’t ask them,
what can I do? Just do something, cook them a meal, clean their
house and do their laundry. Vacuum vacuuming is near impossible
to do after a double mastectomy. Go out there and do something and don’t
just do it a week or two after it took me eight weeks to get back to work.
And even then I was still in pain. So it’s the six to eight
weeks afterwards, excuse me, that you need to keep
reaching out and keep helping. I had a real wonderful support system
and my friends who drove me to my doctor appointments because there’s no driving
for like five or six weeks, who, you know, took me food shopping, who,
you know, helped me out. Excuse me. Sorry. I could not have gotten through
it without my friends. Yeah. Um, it, it’s the point of even a year later when
you mourn your breasts that are gone and you realize, you know, this
is game changing. You know, you need that support. So always be supportive of them the
same way you would want someone to be supportive of you. It’s a big, big thing is just really being there for
your friends and it does tease out who your real friends and
who your real family are. I’d imagine, I know you
use, you mentioned that, um, there was several people who, you know,
said that you, you did this to yourself. That was the big thing.
You chose to do this. You’re just begging for
attention and it’s horrible. It’s horrible that you’ve
had to go through all of
that and it’s fantastic that you actually did find the
support and the help. It’s, um, it really showed me who my friends were
and who really supported me and who really loved me. Um, and now what I want to do is help
others the same way that I can. Just like just talking to someone
about it and their experiences. Um, I had a friend who had a double mastectomy
from having breast cancer and she kept saying to me, just get to
the day one of week, five day. Day one of week five of recovery, all of a sudden you’re going to begin
to feel better. And if I didn’t have her four full weeks of feeling like
crap, you know, for me, and again, that’s how my recovery was. Some
people hopefully have it easier. Um, and sure enough, the beginning
of week five, it was like, Oh, you begin turning that corner.
So, you know, turn to others, talk to others and you
know, find that support. And if you’re not getting the support
they’re out of your life for right now, you need to stick with the people who are
positive and who are going to help you heal and who are going to
love you. And you know, there’ve been comments
about my scars and you know, when I had the first surgery,
their scars around my nipples, I have scars under here. I have
scars from here to here. Um, they went in through my armpits to feel
fat. They went through my belly button, they went in through my
C-section scar. Like you, you’d be surprised what you know,
your body looks like afterwards. And you need to have someone and people
in your life that believe those scars are beautiful because it helps you realize
your inner and your outer beauty as well. And the other thing is your scars
are hardly noticeable now. Yes. You know, I know you, you mentioned
you’ve done a lot to, you know, smooth it out, make it nice. But
you know, it’s hardly noticeable. To you it is. But knowing how I was before, um, and that’s a whole different part of
my life that’s not even there anymore. You know, now it’s my life in
2019 almost 2020. And, you know, living my best life with my daughter and
my husband and my stepdaughter, it’s, um, it’s time for us to enjoy
our lives and to live, you know, a good quality life because I’m healthy
and I don’t have to worry about breast cancer. And that was
the point of, you know, becoming a previvor is not
having to worry and wait anymore. Exactly. And you know, like what you
just mentioned, like I don’t see it, but you do. That’s what I love doing
with my photography is
actually showing people how I see them. I can’t wait to see the
pictures. I know I can’t wait to edit it. You know, we just finished the shoot and
we started doing this video interview, but right after this I’m going to get
editing on them and we got a lot of really good stuff. It’s um, it’s amazing, you know, having a photographer who can see you in
a different light that you see yourself and you know, you’re so positive and you just made
it so easy that you know it. Um, I so appreciate it. You know, you’re doing this to
bring light to previvers, but you’re also continuing
to help me heal. So I appreciate that
and thank you very much. I really appreciate you saying that.
I liked that. That means a lot to me. That’s why I do this type of work. That’s why I do this photography
because it does help people. It does change lives even, you know, so I’m very, very, I’m very humbled and happy that, um, you allowed me to photograph
you and document this part
of your life and to show your triumph over it. And that’s what I really hope to
capture with all of our photos today. Yeah. Well you had said that
you want the photo to represent what was I, I wanted to
represent your strength. Um, we actually had your hair blowing because
I wanted to illustrate you moving. I wanted a movement in it and I wanted
you to be moving forward and moving past all of this. So that’s
why we were doing that. And I also wanted to show the
lighter side of things. You know, I wanted to show that you can reach
happiness after this after you go through all of this. So, and that’s where I’m at now, which is fantastic and it’s taken very
special people in my life to achieve that and help me and, now you’re
included in that. So thank you. Thank you for saying that. It really
means a lot to me. That is why I do this. So, um, once again, I just want to thank you for doing this
interview for doing this shoot. Um, it’s been fantastic. And, um, you did mention that there
are some Facebook groups. Yes. Are there any that you are part of? Um, one’s called Young Previvers
and one’s called previvers. And I think you have to answer
three questions, you know, one of those to make sure
that you’re not, or you are, who you say you are and just, you know, you can ask questions, you can,
you know, um, show pictures. And I’m looking forward to, you know,
putting this in, in that group also, I mean, you know, even I just got to key
chain and a, um, car decal that says, you know, “I’m a Previver” and I
was able to share it on that also. And it’s just, you know,
things to celebrate you. And when they ask questions
that I have answers to, I feel like I’m doing something to
help someone else also. And you know, there’s many different reasons to
do a prophylactic double mastectomy, but we all have the same questions
of, am I gonna feel feminine again? Am I going to heal okay? And, you know,
where do I go from here? And you know, you’d be surprised of, you know,
you need special bras afterwards, you have drains. So you have to figure
out special clothing that will, you know, the drains can go into and all
of these questions that you have, you can find in certain groups that
you know you’re comfortable with. So that’s fantastic. So we’re definitely
going to link to all those groups, um, in the description of the video so you
can take a look there. Um, once again, Michelle, thank you so much. Thanks
for having me. Thank you. Alright. [inaudible].

One thought on “Interview with Cancer Previvor – Michelle Dick

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